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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, September 18, 2008

 

Hierarchies Within Communities

We've all heard it if you are a parent of a disabled child. Be it Downs syndrome or autism or whatever else you hear this: "well, your child is high-functioning but my child is more severely disabled." Or, "my child is autistic but he is very high-functioning."

What I am concerned with is perception of who is "better off" or "better able," or worthy of value within any community. Perhaps Barak Obama is black but not "too black." Maybe Gweneth Paltrow is part Jewish but doesn't "look Jewish." Maybe Adam is down right autistic, but he doesn't "look autistic." What does this say of how far we've really come?

I was reminded of this yesterday when I read an article from the September 8th edition of Businessweek, Paralympians Break Ad Barrier. During the course of the Olympics, which I did not watch this year, I engaged in some debate with Henry over the segregation of the games. Why do we segregate them at all? I questioned. Of course, we do know that the Paralympics and the Special Olympics do not receive the same media coverage, nor do they attract the millions of dollars of sponsorships. I heard from some commenters that a competitor with a prosthetic would have an "unfair advantage." Are you kidding me?

But hey, says Mark Hyman, the writer of the Businessweek article, things they are a changin'. "So far, the money is relatively modest," he notes in referring to Tatyana McFadden's sponsorships from Visa and Nike. "Deals with national brands range from a base of $20,000 a year to $70,000, with bonuses for making the Paralympic team and winning medals." Apparently some of this is just enough to defray the cost of their expenses.

I cannot watch the Olympics itself with the same eye I used to. It's not that I am against competition or the celebration of effort and discipline. I just had the feeling that there was the implication that competitors are models of human perfection. If I took the time to do my research on the Olympics and its history, I speculate I would find such references. Remember the controversy over the little Chinese girl-singer who wasn't good looking enough so she was replaced with another little girl who lip sync-ed at the opening ceremonies? I note these occurrences with a bad feeling in my stomach. Is a passing mention of the Special Olympics during the closing ceremonies good enough? I mean, who is really watching with the same verve and interest? What sponsors are going to support the media in covering it??

Hyman continues by writing, "Disabled athletes, of course, still face many hurdles. Media coverage of the Paralympics is scant, and confusion about the event is abundant. M. Quentin Williams, the lawyer for Josh George, a top wheelchair racer, says part of his job is explaining to potential sponsors that the Paralympics are not the Special Olympics, [bold mine] the competition for the mentally disabled. And many companies 'still have it in their mind that disabled means unable,' laments Deborah McFadden, mother of Tatyana."

Do you see it? Do you witness the hierarchy? I hear the same prejudice from physically disabled people who don't understand autism who claim that the mentally handicapped are somehow still inferior to them. I say, down with hierarchies!

As a parent with an autistic child, Adam, who is the centre of negative attention and targeting by the media and negative "advocacy" groups who claim he is "ill," and should be fixed instead of supported for who he is, I have to call attention to the creation of hierarchies within the very communities we might expect would support him. We can speak of diversity, of acceptance, and yet, we still have a compulsion to create and us and a them. In part, I believe the idea is dominated these days by an economic system that enforces the idea that to be competitive in the global economy means to be of able body and of able-mind. Instead of an organized Eugenics movement that transpired in America in the early half of the twentieth century, we have replaced it with a set of criteria of what we think we need to be in order to be "globally competitive."

I have difficulty with such notions as I watch "severely disabled" non verbal students in my graduate class at York University speak eloquently on their devices, who have insights into a life that not all of us have lived, and who, unfortunately for those corporate sponsors, could and would make enormous contributions to our global health (in the sense of healthy attitudes) and prosperity.

We live in a world of paradox. While things they may be a changn' humans have the proclivity to segregate. As Michael Berube states in his fabulous book Life As We Know It,

"Humans, it would appear, have an innate 'right to life' - but only until they're born. After that, it's their job to become self-sufficient. No one owes anyone a living, as the saying goes, not even if the 'anyone' in question is physically or mentally disabled." (p.57)

and,

"It is a strange land, no doubt, adequate only to the imagination of Dickensian satire, where leading politicians and self-appointed moralists talk endlessly about 'family values' while kicking the crutches out from under Tiny Tim."

The 'system' as we know it, still kicks the opportunities out from under autistic people, and all of us must take note.

6 Comments:

Blogger Ed said...

I agree completely! Great post.

I wish everyone would realize that these hierarchies unnecessarily divide and dis empower EVERYONE.

7:18 AM  
Anonymous Laura said...

I am guilty of adding to the statement "my daughter has autism" the following statement: "but it's totally high functioning and you likely might not even notice so it's not a big deal" ONLY because I'm so tired of defending the diagnosis or label. If my child is in a regular class, she doesn't belong. If she's in an autistic class, she doesn't belong. People are all too willing to tell us where we belong and where we don't, simply to make themselves feel more like THEY do belong where they are. Certainly it's comforting to be around other people that are experiencing similar life stories, but must we isolate ourselves within these very specific, small groups? Because let's face it. Who has our SAME life story? If we keep that up for too long, we'll either be completely alone, or bored because we're not exposed to anything new or different to challenge our way of thinking and seeing the world.

I love that my daughter has rocked all my preconceived notions about...everything really.

I appreciated this post and your thoughts!!

11:00 AM  
Blogger Autism Reality NB said...

Unlike Ed I completely disagree.

These are not hierarchies they are distinctions used to indicate different realities and deficits faced by people on the autism SPECTRUM of disorders.

It is good that there are non verbal autistic persons in your class. Do you visit the autistic persons living in hospital wards and institutional facilities or do you just pretend they don't exist?

My son is diagnosed with severe autistic disorder, assessed with profound developmental delays. In other words he is severely autistic. We love him dearly and find great joy in HIM not in his autism. But he is severely autistic and it takes great arrogance for you to tell other parents how to describe their children's realities.

You do a great disservice to the many families less fortunate than you fighting to help their children.

Shame on you.

1:43 PM  
Blogger Estee Klar-Wolfond said...

See my response in above post.

10:48 AM  
Blogger ~Mama Skates~ said...

i agree with laura - i too am guilty of the "but he's high functioning, so he's totally capable of participating with the others" - why should i have to defend my son's capabilities? or convince others that he should b given a chance? just because he has been labeled as autistic - therefore pre-judged?! give him a chance to prove HIMSELF, before deciding for him!

2:12 PM  
Anonymous Adi said...

I wish the hierarchies would also disappear, especially with regards to autism. Who decided that the ability to detect most obviously that someone has autism is the measure with which its impact or pain or joy or cost or whatever, is weighed?

I am a proud, proud person with regards to disabled athletes, though, because of Natalie du Toit who lost her leg and kept swimming, winning handfuls of gold medals at the paralympics and also making her way to the "normal" olympics. She inspires me, as an autistic person, when she speaks how she is more challenged than other swimmers when swimming in a swimming pool, because turning with only one leg slows her down. However, now that open sea swimming became an olympic event, she participates on equal grounds. The kicking is less important, the turns are moderate and very gradual hence leg or no leg, it is other things that count in the end. That's what I want. Equal grounds, and the recognition that something like that exists for autistic people. In the geek community, we have found it already. I'm sure in places like NASA, the grounds may be even slightly unequal for people without autism (similar to the story of Oscar Pistorius, who was the athlete with the "unfair advantage" because of his prosthetic device - a most interesting study). There is a place for everyone under the sun, and they don't need to be a lesser sun, like the paralympics seem to be.

Here's to equal grounds, then.

Adi

5:01 AM  

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